Thematic Entry Points
A 2006 epidemiological study on albinism in sub-Saharan Africa, based on a World Health Organization pilot survey, investigated the situation of people with albinism in Africa, estimated that there were tens of thousands of people living with albinism in Africa and called for increased awareness and public health interventions to respond adequately to the medical, psychological and social needs of people with albinism. It recommended that, based on the estimates available and the severity of social issues faced by persons with albinism and their families, there should be a public health response to increasing attention on this group of people.
The most pressing health issue faced by persons with albinism is skin cancer. That fact has been firmly established on the basis of several studies and consultations with civil society organizations, particularly those working with persons with albinism. In addition to skin cancer, other urgent health issues include visual impairment and mental health. Persons with albinism are also subject to other health problems not linked to the condition of albinism. Those include common conditions and illnesses to which they have become more vulnerable, owing to poverty and pre-existing discrimination and neglect of albinism in the health and social services system, in general. Organizations of persons with albinism reported specific health problems, such as malnutrition and dehydration, tropical diseases, such as malaria and typhoid fever, infectious diseases, HIV/AIDS, cholera and chronic non-communicable diseases. At present, the enjoyment of the right to the highest standard of mental and physical health by persons with albinism is far from a reality. As a consequence, health issues and intersecting discrimination in the context of exogenous factors have an impact on the enjoyment of other human rights, such as the right to life and socioeconomic rights.
- High susceptibility to skin cancer and the right to life: It has been indicated in several reports that most persons with albinism in sub Saharan Africa die from skin cancer before the age of 40.
- In many countries in the region, sunscreens are prohibitively expensive, leading to a focus on sun avoidance and protection from an early age. However, health education on sun avoidance and the use of other protection measures such as clothing with maximum coverage are not widely known in the health systems and in large areas of countries.
- Outdoor working conditions in which most persons with albinism often find themselves – after dropping out of school due to a lack of reasonable accommodation – lead to and accelerate the development of skin cancer.
- For those who already have cancer, treatment is often unavailable leading to early death.
- Psychosocial impact and mental health: These have been identified by persons with albinism as one of their major health issues. The issue is global, as the psychological and mental impact of stigmatization is reported worldwide. The need for psychological and rehabilitative support should not be underestimated; not only for those that have survived attacks and mutilation, but also for all persons with albinism who experience fear, bullying, stigmatization, lack of social life, rejection by families and isolation, leading to depression and mental illness.
- Replicate the Kilisun model of local sunscreen production in the form of a social enterprise employing persons with albinism and other disabilities while ensuring national supply of sunscreen at little or no cost. (Model successfully tested and ongoing in Tanzania).
- Provide guidance and training for health professionals on the care needed by persons with albinism and ensure that the training of health workers, including ophthalmologists, dermatologists and nurses, includes topics on the condition of albinism and protective measures.
- Build capacity of civil society to advocate for their rights to the highest attainable standards of health including training and support for:
- Requesting sun protection: sunscreen and clothing as a matter of reasonable accommodation
- Placing sunscreen on the list of essential medicines
- Support research including household surveys and epidemiological studies on albinism in order to gather the data necessary to develop public health policies.
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